PALS ROLL CALL NEW THREAD (PALS ONLY) [Wednesday or whenever]

Nikki J

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I totally get that Lisa I fell once when my blood pressure was low and I was dizzy. I probably wouldn’t have fallen though if I didn’t have weakness. I think of it like ascribing fault in an auto accident- that one was 90 percent dizzy 10 percent ALS. 😀
 

wmilo

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Hi, all.

Using the lift for almost all transfers, and using the BiPAP all night consistently. Sometimes a nuisance, but definitely making things easier for CALS and safer for both of us. It still feels weird at times to need a PWC to get around.

Al, I'm glad you will be able to get the equipment you need.

DD moved into an apartment. Will miss seeing her as often, but she needs to have her own space.

Best to all,
 

KevinM

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Thanks for the update, Bill. I’ve said this many times, but it bears repeating: you and others here are an inspiration. I get strength from your strength. Kevin
 

lisa g

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Bill- happy to see your adapting to new equipment.
 

[email protected]

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Enjoying perfect weather for Iowa in Sept. Also enjoying even more a visit from my daughter (NY), her husband and my grandson. Now 12, about to turn 13, he towers over my daughter and is catching up with his dad. Her husband is a demon bike rider and had ridden all over the county on a bike he keeps here (he rides all around the NYC area on his other high end bike). We've been struck by how much a 12 yr old boy eats--he used to be picky, now always hungry. A wonderful visit--it's been close to 2 yrs since we saw my grandson and son-in-law.

Ed
 

KevinM

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Perfect weather and a visit from family. That would lift anyone’s spirits, Ed. Thanks for posting first this Wednesday!
 

blitzc

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I'm here!
Nice cool fall-like weather. My beautiful summer flowers are loosing their luster. Time for mums.

ALS clinicthis past week- I'm a nothing Burger...couldn't do anything they asked of me. Obviously much weaker. Pulmonologist on Wednesday- I'm certain of a poor report from those tests. :(

Getting ready to put vinyl plank flooring in the entire condo. Tearing up all carpet and linoleum. My pwc has destroyed this place. $$$$ Fortunately they will install while we are out of town.

Heading to Boston, Maine and NY Finger Lakes for 8 days end of month. Hopefully catheter makes traveling easier.

Husband hurt his back last week, which has made making transfers nearly impossible and rather painful. I'm destroying everything I touch! 😫😩

Weary of all this. I'm sorry to be a downer.
 

KevinM

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Oh Cathy. I am so saddened to hear how much of a struggle it is. I think of you often. Kevin
 

Nikki J

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Cathy I am sorry. I hope the pulmonologist visit is at least a little better than you expect.

it is great that you are traveling. Hoping for great weather and wonderful experiences. That is a lot to pack into 8 days. Good for you!
 

blitzc

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I had my pulmonologist appointment today. Of course my overall function % has declined but not greatly. The last visit was January 2020 before the pandemic shutdown. I had a 50%. Now fast forward to September 2021 and I declined to 40%. So my doctor calculates a 20% decline in almost a two year period...not too bad. I expected worse. He said he has seen ALS patients with 20% decline in 3 months, so he feels positive about my rate.

Thanks for the concern, my friends. Every month new challenges.
 

KevinM

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I missed my check-in yesterday but it was very good to hear that you got some bit of good news, Cathy.

My very slow weakening continues, but I’m doing okay overall. Have not had to ask my wife for help with anything yet.

As always, I would love to hear from folks. Kevin
 

BlsdMama

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Dec 5, 2016
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05/2017
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IA
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Cedar Rapids
@[email protected] - I didn’t realize you were so close to me! I’m in NE Iowa too. I assume you go to UIHC?

@blitzc - we have LVT here. My PWC is rough on them too. When I turn, the wheels pull the planks apart, breaking the groove where they fit together. I love the LVT - sturdy, kid friendly, impervious to liquid… I haven’t come up with a solution. :/

Good week, beautiful weather. Moved out my next ALS Clinic because of a field trip to a pumpkin patch. Seems reasonable! ;)

Not sleeping as well these days… muscle spasms in my legs are really interfering. But other things are so good. I love fall. Driving to an apple orchard with kids and grandkids this weekend.
 
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